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Stage 4

For the past few weeks, amongst the most roller coaster of emotions, I’ve thought on multiple occasions what I’m going to do with this blog. To end it on such a sad note feels so final. This blog was meant to have many, many, more updates and entries. Mum’s “journey” was supposed to be longer, with multiple more ups, and inevitably, many more downs. It was not only a tool that I used to keep family and friends updated, but was also my way of talking about something painful. It was cathartic. It helped me to understand and navigate the worst period of my life, and by putting everything in writing, and doing something that Mum loved, I felt better.

To end on a post titled “What Happened?”, doesn’t feel right, so I’m going to continue writing. Instead of a blog where a mother’s diagnosis with stage 4 melanoma is discussed from a daughter’s perspective, it is a now a blog about dealing with the aftermath. Navigating the grief of losing a loved one. Losing a mother, from a daughter’s perspective. I’ve been told multiple times by multiple people to write a journal; to put my feelings down on paper; that it’ll help. Instead, this blog is my journal – and if it helps anyone who’s reading it who is going through something similar, then I’ve continued to do what Mum wanted, which at the end of the day, has always been the true reason for this blog. It’s also, let’s be honest, a lot cheaper than seeing a psychiatrist!

So here it is, the next chapter of HerMelanoma.com

They say that grief comes in 5 stages. Denial, anger, bargaining, depression, and acceptance. Everyone deals with it differently. I personally never felt or feel denial. I don’t have the ability to push it to the side, shut it out, or have moments where I can forget what’s happened. I wish I did, especially in those early days after Mum’s passing – but it always felt painfully real, from the moment my aunt called me at 4.50 am on that Sunday morning, and said the words “Alex, she’s gone”. Since that moment I’ve only felt one emotion, that isn’t a stage or a page from a psychiatrist’s playbook – pain. Intense, breathtaking (literally), pain.

Those 2.5 weeks in Melbourne after Mum passed were, lets just say, the worst. Due to the circumstances, everything was painfully dragged out. The hardest was the emptying out of her apartment. It smelt like her. It felt like her. She was everywhere. Going through her belongings, remembering all of the memories that were attached to many of them, was gut wrenching. Every item that was thrown out felt like we were throwing away a piece of her. The one and only good thing to come out of it was that my aunts, who live in Melbourne, no longer have to take on that task, and after everything they’ve both done these past few months, I’m glad we did at least that for them.

For those that personally knew mum and our family, you’d know that mum and I shared a special bond. She was, and still is in every sense of the word, my best friend. There was nothing she didn’t know, I told her everything about everything. She got me through every high and low of my life, especially my lows. She was my rock, and the only person I wanted when things got hard. Which is why I’m struggling. Things are hard, very hard, so naturally I want and need the one person I can’t have; my Mum.

Being back in London has been a whole mixed bag of emotions. I feel most at home here, but I also feel like I’m living in limbo. I’ve since gone back to work, yet every day feels like i’m floating through them, without really registering what’s going on. My one saving grace is that the place I work is filled with supportive, understanding and incredible women. From day one they were there, which is a far cry from the management of my previous workplace, making it mean so much more. I’ve had moments where I’m sitting at my desk and all of a sudden, without reason, the reality of my new life rushes in without warning. I’ve had days where I can’t get out of bed and have been forced to text work that I can’t come in that day. And they’ve made that OK. Sleep is now a luxury – turning off the constantly turning cogs in the brain is something that I haven’t mastered yet, but I’m getting there.

I feel like in my life I’ve been incredibly lucky in that I’ve never experienced real pain before. I’ve never lost a loved one that I was close to. I’ve never been through a painful break up. This “luck” means that I’m now in completely new and unchartered waters that I have absolutely no idea how to navigate. I have never felt pain and grief of this magnitude before, and at 30 years old, I find myself being completely and entirely overcome by it. At the end of the day however, I know that that’s ok and that this is completely, 100%, normal. It has barely been a month since I lost my mother, and I know that with time things will get easier. For now, I simply have to get through this and use the incredible people around me to help me to do it.

I know this blog post has been long, and incredibly depressing. Death is depressing, and as mentioned above, depression is, after all, a stage of grief. There’s no point using this blog as a means to talk about how i’m feeling if I’m not 100% honest. This is the first “journal” blog post of many, so undoubtedly it is going to be one of the heaviest. Talking about it and writing again on this blog has already made me feel just that little bit better, and I know that Mum, wherever she is, will be glad.

Alex

p.s A work colleague of mine is incredibly talented at writing poetry – below is one of her beautiful poems she gave me, which I couldn’t love more…..

I’ve been of mixed minds when it comes to writing this post. Whether it’s information that should be shared, or whether it’s the end to Mum’s battle that people would want to hear. I know Mum though, and I know that she loved this blog and always wanted me to share every bit of information on it, in to order to a) keep friends and family updated, and b) hopefully help someone reading this who is going through something similar. So in the spirit of doing what I know Mum would have wanted me to do, here is what happened.

When you say or think to yourself “but she was doing so well, she seemed to be ok”, you’re not wrong. After a few hiccups along the way, Mum finally started reacting well to her treatments, and was given the big thumbs up on her final blood test a few days before her passing. Her liver function was back to normal, and Mum in herself was feeling ok. Future therapies and scans were all scheduled in and ready to go, with September 7th being the next big milestone where we could finally see how effective the radiation treatments were on her brain tumours. It was something Mum was working towards.

During Mum’s last week, I knew she was having a few bad headaches, but after having 18 radiation treatments in a row, this was all par for the course; a totally normal side effect that was to be expected. During that week, Mum’s steroid dose (remember steroids are used as an anti-inflammatory) was decreased, which Mum seemed happy about as her puffiness was starting to subside. She also had a brain MRI scheduled in for the Friday before she passed, however unfortunately when Mum and Kerri turned up for the scan they had double booked her and sent her away, with another scan rescheduled for a later date.

Throughout the course of Friday evening and Saturday, both myself and my aunts sent Mum multiple messages with no reply, and tried to call numerous times. As this was Mum’s first weekend after radiation treatment and she’d been quite tired throughout the week, no-one thought anything of it and just assumed Mum was resting. Come Sunday morning, my aunts started to become concerned, so Kerri and my uncle Richard decided to head over to Mum’s apartment to check on her and make sure she was OK.

Without going into too much detail, sadly upon arrival my aunt and uncle discovered Mum lying peacefully in bed, having passed away.

The medical report sited Mum’s passing occurred in the early hours of Saturday the 10th of June, as a result of multiple massive brain haemorrhages. Due to the surprising and unexpected nature of Mum’s passing, all of her treating specialists requested an autopsy be carried out, and knowing Mum would have wanted one so that it could hopefully prevent what happened to her happening to someone else, we granted permission for one to go ahead. We are currently still waiting on the results.

It is without a doubt that Mum passed a lot earlier than she should have. She wasn’t given the opportunity to fight, or attempt to kick her cancer’s ass. Sadly, Melanoma is not responsible for Mum’s passing, her treatment is, and we can only hope that going forward more thought is put into how many consecutive radiation doses are given, and whether more regular scans are required to monitor potential brain swelling and bleeding. It is a cruel and unfair ending that unfortunately will take my family a while to come to terms with.

On a positive note, Mum’s funeral was everything we wanted it to be, and I truly do think she would have been very happy with it. It continues to blow my mind how many lives Mum touched, and the turnout for the day, as well as the endless stream of condolences and messages received, only further prove this.

Thank you to everyone for your support and well wishes during this time – my family and I couldn’t be more grateful. I hope in some small way, this has given a few of you some closure, as I know many of you were just as confused as we were that she left us so soon.

Thank you so much for taking the time to read this blog throughout the course of Mum’s short journey with stage 4 Melanoma – doing something that I know Mum loved has been a pleasure.

It’s been almost 2 weeks since my last update, and finally I can say that i’m writing about some good news!

Following a brief stint in ICU after Mum had developed an infection and become septic, she was sent to the ward for a few days for observation and then finally sent home at the end of last week. Although Mum’s liver function hasn’t completely returned to normal just yet, she is feeling a lot better and is safe to say has relatively returned to her “old self”.

Mum continues to go to her daily radiation sessions, and with only a handful of sessions remaining she’s almost at the end. She is still having her immunotherapy infusions, and for now it’s just a waiting game until Mum has scans and tests in a few weeks time to see if the radiation and immunotherapy sessions have had any effect. Fingers crossed!

She’s currently on a myriad of medications, including a new autoimmune medication to hopefully prevent her from picking up any more nasty infections like last week. For the nurses amongst us who are interested, here’s Mum’s drug round-up:

For more exciting news, Mum became a grandmother again last week after my sister gave birth to a gorgeous baby girl named Ella Louise Skovmand (photos below). She couldn’t have come at a more perfect time and has truly given our family something to be incredibly happy about for the first time in months. I know Mum is really looking forward to meeting her in a few weeks time when Sam and her family travel to Melbourne for a visit.

For now that’s everything, let’s hope the good news continues and my next post is just as easy to write as this one was!

Just a quick update today. Unfortunately the past few days haven’t been the best for Mum – her liver function wasn’t improving as quickly as the doctors thought it would with the IV antibiotics and steroids she was on, so as a result she has been kept in hospital for monitoring and commenced on different antibiotics. Yesterday Mum unfortunately spiked a temperature again with full body aches and pains, so was sent for a CT and ultrasound, with her daily radiation dose cancelled – we’re currently still awaiting the results from these scans.

Unfortunately the day didn’t progress with much improvement, and overnight Mum had the medical team called by the nurses to review her as a result of a fever, rapid heart rate, and extremely low blood pressure of 60/35. Mum was immediately given IV fluids in an attempt to raise her blood pressure however this had no effect, and Mum, believed to be in a state of septic shock, was transferred to ICU to be commenced on a Noradrenaline infusion (all of this explained below).

Fast-forward to the following morning – I have just spoken to Mum and she’s feeling a lot better and is now maintaining her own blood pressure without any medication support. She’s due to be transferred back out to the ward today which is great news. It’s obvious she’s relatively back to her old self, as whilst I was on the phone to her she buzzed the poor nurse and hurried her up to check her blood sugar levels so she could eat her breakfast (steroid use can alter blood sugar levels, so a daily measurement needs to be taken whilst on them – before food).

I’ll keep you all updated on how Mum progresses over the next couple of days – hopefully she will be discharged from hospital soon and can get back to the comfort of her own home.

Alex

P.S Some incredibly random photos below, which Mum has sent through of her stay in ICU…..

Septic Shock – a serious medical condition that occurs when sepsis, which is organ injury or damage in response to infection, leads to dangerously low blood pressure and abnormalities. It is often categorised by it’s lack of response to rapid IV fluid administration, or “filling” (which in normal circumstances has the ability to raise a person’s blood pressure without the need for further active treatments).

Noradrenaline – a drug which, when given by infusion, has the ability to increase heart rate and constrict the blood vessels, which in short increases blood pressure. It is very useful for treating medicalemergencies such as septic shock that involve a critically low blood pressure.

I wish I could say that this post was going to be a positive one, filled with good news and breakthroughs, and all the good vibes you’d expect for Mother’s Day; unfortunately, we’re not there just yet.

Mother’s Day for Mum was spent in the 5 East Ward of The Alfred Hospital this year, made special by my aunts and cousins, Luke and Max, who all made sure she felt loved, by spoiling her with cupcakes, chocolates and a lifetime of selfies. Now to the not so fun part – why she was there.

As you all know, Mum is currently in the thick of her 18 radiation doses, 6 down, 12 to go. After the first radiation treatment, Mum started experiencing some severe migraines, which upon investigation was a result of swelling of the brain. She was given some hefty pain killers in the form of Endone and Targin, and also had her dexamethasone steroid dose increased to help reduce any inflammation. Now I don’t know if you’ve ever experienced being on high doses of steroids yourself, or know someone who has, but there is always one glaringly obvious side effect that comes along with it – bloating, a lot, of bloating. You become puffy and squidgy all over and basically look like you’re retaining more than the average 4-6 litres of water they recommend you drink a day; it’s not a good look, and unfortunately Mum has been hit by this side effect hard and fast!

Amongst the radiation therapies, Mum is also continuing on with her IV immunotherapies, which for the body, is a huge amount of chemicals and radiation to have to take on in a small amount of time. This was made evident on Friday, when unfortunately during her IV therapy, Mum’s body finally threw it’s hands in the air, stomped it’s foot on the ground like a petulant 3 year old, and basically tossed all of it’s toys out of the cot in protest – it was not in the mood to play that day. Mum’s temperature soared, she got the shakes, her legs went numb, and the sweats were thrown in too for good measure. The oncologist was called, blood was taken for testing, and finally after 4 hours and a nice dose of Panadol, Mum’s temperature normalised and she was able to continue on to her radiation session.

Fast-forward to a few hours later, at home and resting after a horrible day, Mum receives a phone call from her oncologist regarding her blood test results. Unfortunately her LFTs were through the roof, which for my non nurse readers, means her liver function was abnormal. As a result, Mum was called straight back to hospital to be admitted and to have further tests carried out. So where are we now, 2 day later? Still in hospital, where she will stay until Tuesday which is when her last dose of IV steroids is due. She is also on some IV antibiotics, continued on painkillers, and her new favourite, Temazepam, which is helping her finally get a good night’s sleep. Thankfully her daily blood tests are retuning to normal, and it appears she may have just had a case of hepatitis (inflammation of the liver tissue) which can be a side effect of the immunotherapy. We need to remember however, Mum does have a small tumour in her liver also, so it was comforting to see the hospital jump on it and investigate as quickly as they did.

Mum will continue on with her daily radiation therapies, and hopefully this is just a small bump in the road that, fingers crossed, leads to some eventual good news. Apart from feeling puffy, she’s feeling OK, and is still being her typical strong and resilient self.

Happy Mother’s Day, Mum, Sammy and I love you so much and continue to be in awe of how you’re taking all of this in your stride – you’re amazing. Hopefully next year is a better one! xoxo

I’m not going to lie, this past week has been a hard one, not just for Sam and I being so far away, but for Mum, as her treatment took a giant leap into the ‘overwhelming zone’ yesterday.

As mentioned in my previous post, Mum now requires full blown radiation treatment to attack the tumours in her brain as well as the bone of her right upper arm, so to say this past week has been a busy one is a bit of an understatement. Let’s start from the Tuesday…..

Tuesday was the day Mum was fitted and measured for her “radiation mask”. In short, a piece of plastic mesh is melted over the face to create a made-to-fit special mask that is designed to keep the treatment area still during radiotherapy in order to make it as accurate as possible. The masks aren’t pretty, in fact they’re pretty confronting, and look like they’re straight off the set of a horror movie, but at least the lipstick Mum was clearly wearing for this fitting makes it a little less Texas Chainsaw Massacre – image below.

From here, Mum had a meeting with the orthopedic (bone) specialist, where results from her recent PET and MRI scans were discussed. Unfortunately, it appears as though the cancer has slowly degraded the bone in her arm, resulting in it becoming quite thin and fragile, and at risk of crumbling or fracturing from the amount of radiation Mum is about to receive. The plan to, hopefully, counteract this, is to surgically insert a metal rod from the rotator cuff down to the elbow, with a few cross pins along the way. This surgery is due to take place after the radiation (a bonus – radiation takes time to damage bone once in the system, so the surgery doesn’t necessarily have to take place immediately), and is scheduled for some time after June 1st.

On Wednesday, Mum met with her oncologist to discuss how the radiation therapies were going to disrupt her immunotherapy treatments. This is where we received one bought of good news, finally. Thankfully, the second infusion doesn’t need to be pushed back as previously thought, as after a discussion between the oncologist and radiation therapist, they don’t believe there is going to be an adverse effect, and are allowing the infusion to continue as scheduled. Therefore, Mum’s second immunotherapy infusion is scheduled for Wednesday the 10th of May, with the 3rd infusion taking place shortly after the radiation therapies conclude. It’s a lot, her body is going to feel it, but at least nothing is being put off, and this a very good thing.

Friday. Radiation commencement day. Mum received her first of 18 radiation treatments yesterday, and was also given her treatment schedule for the next few weeks (attached below). She’s feeling OK, apart from a bit of warmth to the area there apparently wasn’t much discomfort at all. The dexamethasone (steroids) Mum is on twice daily is hopefully going to counteract a lot of the symptoms, but there are two outcomes that can’t be avoided; 1. weight gain/bloating from the steroids, and 2. total hair loss – every woman’s worst nightmare, really!

So lets be honest here, the next few weeks are going to suck, however Mum is remaining extremely positive and is blowing me away with how she is taking each blow with continued strength and a kick-ass attitude. I know with everything she must be feeling incredibly overwhelmed, but speaking to her you wouldn’t know it; she’s a little bit awesome.

I also want to say a huge thank you to my aunts Kerri and Julie, who continue to make sure Mum is at all of her scheduled appointments and treatments, and make sure she always has visitors and company on the weekends. Sam and I, being so far away, appreciate you both more than you know, so thank you, you’re both amazing.

As always, I’ll continue to keep you all updated over the next few weeks – let’s all cross our fingers and hope that these radiation doses work and destroy the hell out of each and every one of those damn tumours!

As mentioned in the previous post, the 27th of April was the scheduled day for another MRI, followed up by an appointment with the radiation oncologist to discuss potential treatment. You may remember that we discussed stereostatic radiotherapy, where the few tumours in the brain could be blasted with a special, pinpointed beam of radiation. Unfortunately, this won’t be the method of treatment anymore, as a close review of Mum’s CT scan from last week, along with the most recent MRI, determined that there are a total of 12 tumours now in mum’s brain alone, meaning there are too many for stereostatic radiotherapy to be effective. Instead, whole brain radiation therapy will be required, given over a total of 18 treatments, Monday-Friday, for the next 3.5 weeks. On top of this, as radiation can interact adversely with Mum’s immunotherapy drugs, her next immunotherapy treatment will have to be pushed back 10 days.

Lastly, the cancer cells present in the bone marrow of the right forearm have been causing Mum a lot of pain and discomfort. As a result she has been prescribed 5mg of Endone and Targin 5/2.5 twice daily to help with this. A single blast of radiation will also be delivered to the arm to try to kill off these cells, so let’s hope it works!!

I’ll keep everyone updated as much as I can over the next few weeks, as no doubt these are going to be amongst the hardest for Mum. She’s being incredibly positive and taking everything in her stride, both myself and my sister Sam are so incredibly proud of her.

Let’s hope for some positive news to go with my next update!

Alex

P.s To finish on a positive note, I’ve attached a photo of Mum and her sister Julie from their visit to The Dandenongs last weekend – terminal cancer has never looked so good!